The Accidental Amazon

Lost in place.

…Things fall apart; the centre cannot hold;
Mere anarchy is loosed upon the world,
The blood-dimmed tide is loosed, and everywhere
The ceremony of innocence is drowned;
The best lack all conviction, while the worst
Are full of passionate intensity.
Surely some revelation is at hand…

From The Second Coming
by William Butler Yeats:

~~~~~~~~~~~~~~~~~~~~~~~~

Well, I’d like to think some revelation was at hand. But when I’m in limbo, it’s hard to tell when the end of it might be revealed.

It’s also hard to describe limbo. By its very nature, it defies description, flouts my attempts to pin it down. After all, if I could describe it, I might not, in fact, be in it anymore.

I can tell when I’m in it, though. I don’t feel quite like myself, as though my edges were blurry. I don’t look blurry to anyone else. Outwardly, I function. I do remember to turn off the coffee pot before I leave the house, put some crunchies in the cat dish, grab my keys. I remember to show up for work, put on the parking brake before I get out of the car. The underpinnings of daily life keep me from falling off the edge of this formlessness. It reminds me a little of the immediate shock-and-awe phase I went through right after I was diagnosed, but without the adrenalin rush. A rush would be nice, actually. It would be more interesting than feeling like a cardboard cut-out of my usual self.

I guess the good news is that, if Yeats was right, then at least I range among ‘the best.’ I certainly seem to ‘lack all conviction.’ It would be nice, though, to have a little ‘passionate intensity.’ I almost wouldn’t mind having a flat-out temper tantrum, but I can’t seem to work myself up enough for one.

Sigh. This is not a new thing. When I look back, I seem to hit a limbo skid about this time every year since I finished acute treatment late in 2008. My post-cancer-treatment, mid-winter slouch. A year ago, I turned to song lyrics by Shawn Colvin to describe it:

China gets broken
And it will never be the same
Boats on the ocean
Find their way back again
I am weaving
Like a drunkard
Like a balloon up in the air
I’m needing a puncture and someone
To point me somewhere

From “Steady On”
by Shawn Colvin & J. Leventhal

~~~~~~~~~~~~~~~~~~~~~~~~

I feel perhaps a little less broken this year, more glued together. I just don’t feel like the pieces are in the right place yet. Two years ago, in January of 2010, I was wrestling with acute grief over my lost self, but trying to plow through it and look ahead. My chosen song was from Cyndi Lauper, my lyric, “I wanna be the one to walk in the sun/oh, girls just wanna have fun.” The grief is not acute now, but it’s still there, like white noise. I can hear it when it’s too quiet.

The year before that, in 2009, I’d just finished acute treatment and started this blog. I’d only just “stopped freaking out on a more or less continual basis.” There was no music in my head, no poetry in my soul that January. Just a deep weariness.

So, I have felt better each year. I’m just not quite — all there yet. I don’t even know if there is an ‘all there’ there. Meanwhile, at least my cardboard cut-out self is still standing, still putting on a good front. So far, no one else seems to notice that she’s not too steady on her pins. I just need to keep her out of the wind for a while.

Here we go again.

There’s a little black spot on the sun today,
That’s my soul up there.
It’s the same old thing as yesterday
That’s my soul up there.[...]
There’s a blue whale beached by a springtime’s ebb
That’s my soul up there
There’s a butterfly trapped in a spider’s web
That’s my soul up there

I have stood here before inside the pouring rain,
With the world turning circles running ’round my brain

From “The King of Pain”
by The Police

~~~~~~~~~~~~~~~~~~~~~~~~

Because I’ve lived long enough, I know that having an identity crisis is not the end of the world, although it’s quite unpleasant while it’s happening. Because I’ve been an artist long enough, I also know that fallow periods are necessary, that they do not signify emptiness. There is work going on, it’s just hidden from view. At the end of it, my cells and neurons having rearranged themselves, I will emerge, feeling less tentative, more solid, more able to meet life’s challenges, more willing to crawl out on a limb, risk myself in creativity, find myself in perspective, lose myself in laughter and friendship.

But for now, all I can do is trust — trust that the world will keep spinning on its axis, trust my faith in life, trust myself. I don’t much like it, but there are worse things than feeling rudderless. At least I’m floating and drifting, not sinking to the bottom. That’s good. Happy Limboversary to me.

And there’s always chocolate.

Gimme Some Indestructible Gauntlets.

First of all, a word of profound thanks to all my cyber-peeps on Facebook and elsewhere for your understanding and concern yesterday. If love and good will can prevent cancer, then after yesterday, I’m set for life. As I sniffled my way through a few meltdowns, all your comments, messages and emails touched my heart and filled me with gratitude. And knowing that most of you have lived through this nonsense yourselves means a great deal. No one knows how it feels to hear the news of a cancer diagnosis like another person who’s heard it herself.

Many of you have already read of my recent adventures in colonoscopy. To recap briefly, I had scheduled my first, recommended over-fifty colonoscopy in 2008. Then I was diagnosed with breast cancer, so I postponed it. Just over two years later, in January of 2011, I finally rescheduled it. And despite following the prep instructions faithfully, the prep didn’t work completely, so the colonoscopy was not completed.

I scheduled another for a year after that, which took place a week and a half ago, on January 6th. So, I rang in the New Year by avoiding fiber and red food for a week, drinking a few gallons of Gatorade and Miralax for a few days, and off I went. The colonoscopy was completed this time, several polyps were removed, and the doctor said they all looked normal. But I woke up during the procedure, to find myself with severe abdominal cramping, somehow managed to mumble that I was awake and in pain, and got no help for it. Afterwards, I stumbled home, once again disillusioned with the inattentiveness of healthcare clinicians, feeling like I’d been kicked by a horse. I spent the next several days recovering and researching clinical protocols for managing procedural pain.

Last week, I called to find out if the path results were back on all the polyps that were removed. I got a call back from a very nice nurse case manager. Yes, the report was back, but she was out of the office, so she didn’t have it in front of her. But she assured me that I would have been called by then if there was anything suspicious. I explained that I’d already been through the cancer adventure, and that, as such, I hated waiting for path results. She said very kindly that she would check the report and call me back if there was bad news. And she didn’t call. I did have an appointment with the nurse practitioner at the gastroenterologist’s office anyway. So, feeling confident that there would be nothing more onerous at this visit than my feedback about the inadequate prep instructions beforehand and the inadequate pain relief during, I visited her yesterday.

Bad News, Good News

And she told me that one of the seven polyps removed turned out to have a top-dressing of carcinoma in-situ, specifically something called tubular adenoma with high-grade dysplasia. If you were to Google this, which of course I have, you would find that this is the non-invasive version of colon cancer.

That was the bad news. The good news was that the entire polyp, with its treacherous cancer cap, was removed, along with the stem, and that they got it all. Which makes it sound like a cancer mushroom. [There's a fungus among us, as my father used to say.] And that no other treatment is needed at this time. Naturally, this means that I do not get to wait another ten years before my next colonoscopy. My next one will be scheduled one year from now.

So. Major gobsmack. It was an interesting sensation to experience a condensed version, as it were, of my previous cancer experience. Sort of like bad speed dating, or the Readers Digest Version of cancer. I felt all the shock & awe, panic, astonishment, relief, miserable awareness of implications, and grim acceptance of the need for lifelong vigilance, all in the space of several seconds. As one of my breast cancer pals succinctly put it, “YIKES!! And WHEW!” Quite a field day for my neurons and adrenal cortex, I must say. It’s amazing I could even speak at all after that.

But I did. And we talked about my maternal family’s cancer history. I brought it up. One of the things that drove me to persevere on this colonoscopy adventure, despite the almost fiendishly distracting circumstances of the last few years, was that my cousin died of colon cancer when she was in her fifties. There is some sort of suspected genetic relationship among breast cancer, ovarian cancer and colon cancer, all of which have appeared on my mother’s side of the family, along with melanoma, which killed my cousin’s dad. Thus, the NP and I visited the subject of genetic testing. It was a revisit for me. I saw a genetic counselor a year or so ago to investigate this, and since my rellies with the relevant cancers were all ‘secondary,’ i.e., first cousins and aunts, genetic testing was only a borderline recommendation. But I don’t have any ‘primary’ relatives who had cancer, no siblings, and my parents died of other things. So, it’s not clear that genetic testing would be beneficial. But the NP is going to look into it and get back to me.

I did somehow manage to articulate my feedback and suggestions. The next several minutes were almost more unpleasant than the preceding ones. But the long and short of it was that the NP, who is a very smart and compassionate woman by the way, could really offer no satisfactory explanation for why the doctor did not recommend that I be given more medication when I woke up. She did, however, assure me that in the future, there would be a separate anaesthesiologist in attendance who would mostly likely use a different moderate sedation cocktail and make sure my recent experience was not repeated.

“Kathi,” she said at the end, “I’m really glad you had this colonoscopy.”

“Me, too,” I admitted. What else could I possibly say? I’ll drink two gallons of Gatorade and Miralax every week if it keeps me from developing invasive colon cancer. And, as I said to one of my BFFs last night, I seem to have experienced every other miserable thing that could occur with a colonoscopy, so why not this, too? You know, just to round things out.

The Zero that isn’t.

So, I’ve had two types of cancer. And thus far survived. Yay me. It’s hard to describe what I feel.

I’ve had a few random thoughts about researching what other sorts of cancer can appear in non-invasive form, but I don’t have the heart for it right now. So far, I’ve had two kinds of high-grade, in-situ cancers that, if left unattended, would have had a good chance of worsening. To all those people out there in oncology-land who have been contemplating the idea of removing ‘carcinoma’ from the names of some of these in-situ tumors: don’t even go there. Because guess what? We’re not off the hook. Because any prudent discussion with your patients has to include the C word anyway. So, who do you think you’re kidding?

I wonder if there should be some sort of Stage Zero Cancer Club. Because I think I deserve honorary life-time membership now. And I think we should all get Wonder Woman’s Lasso of Truth to use during all our follow-up medical appointments. And we should probably consider a name change. “Stage Zero” just doesn’t quite cut it. Maybe “YIKES! WHEW!” would be more apt.

And I’d also like a pair of Wonder Woman’s Indestructible Bullet-Bashing Gauntlets while I’m at it. Because I’m not feeling very indestructible right now.

The “Wonder Woman” movie poster above was, of course, Photoshopped by moi. Please feel free to share your own “YIKES! WHEW!” experiences.

Just when I was beginning to wonder if I was perhaps not a very nice person after all, that I was maybe the only blogger out there who was not feeling particularly sanguine, philosophical, grateful, brave, accepting, noble, etcetera and so forth, about facing 2012 with some sort of valiant resolve to be a better person, achieve world peace, and — why not? — maybe help cure cancer, some of my cyber sisters reassured me by proxy.

First, there was this post by Katie on Uneasy Pink that got me thinking about what motivates us to blog. She has noted a shift in her perspective over the past several months, and wonders where it’s brought her. While her commitment to the meaningful issues she has so ably identified has not wavered, she has realized the wisdom of picking her battles, that going head-to-head with some of the most egregious examples of foolishness out there in the land of breast cancer non-awareness “is a tremendous drain of energy. [...] that if I take on a fight, the fight becomes the central issue. While I feel it’s important to stand up to these people and places, I worry that I run the risk of creating just another distraction from the truth about breast cancer.”

I think I’ve been wrestling for a while now with a bit of outrage-fatigue myself. Not that I haven’t been up to the ol’ snark, high dudgeon and righteous indignation since, but a steady diet is wearying. And it doesn’t pay the mortgage. Meanwhile, I’m still slogging my way through this vast archeological dig known as “trying to get my life back.” Howard Carter had an easier time uncovering King Tut’s tomb.

Several of my blog sisters have written posts about coming up with three words to help guide them through 2012, inspired by Philippa at Feisty Blue Gecko. And they’ve been wonderful words — like “resilience, escapade and wonder,” the words Philippa chose for this year; or “create, nurture and appreciate,” the words chosen by Jackie at Dispatch from Second Base. Over on Twitter, one of the weekly Breast Cancer Social Media tweetchats (#bcsm), hosted by Jody of Women With Cancer, was devoted to picking three words for 2012 and was a rousing success.

In an attempt not to be a New Year’s grinch, I tried to come up with three words myself, but somehow, my heart just wasn’t in it. Not that I didn’t come up with some words. But the ones I kept coming up with all started with the prefix “re-” — an endless stream of words like renew, restore, reclaim, rediscover, repair. Not that there’s anything wrong with any of them. But I began to wonder about that prefix, the “again” of it. There was a message in that “again” that bothered me. It suggested that I was trying to go back, trying to find that person I used to be before breast cancer. And that person is gone. And I haven’t recovered (another “re-” word) from that loss. And maybe I never will. Huge, life-changing losses are like that. They may hurt less over time, but they never really go away. Instead, they reside in us, seem to become part of our DNA.

In my stream of consciousness, I thought of a “re-” word in another language — the word ‘rechercher’, which means to search or retrieve — literally re-chercher, to look again. It occupies a famous phrase, which is the title of Marcel Proust’s magnum opus, À la Recherche du Temps Perdu. For years, the accepted title in English was “Remembrance of Things Past.” But that translation did not at all capture the feeling that prompted me to think of the word. It was the literal translation of the title that expressed it more closely — “in search of lost time.” And I discovered that, in fact, that translation has now become the accepted English version of Proust’s title. And that’s what all those vaguely disturbing “re-” words were saying, that I was once again, as I’ve done almost non-stop since being diagnosed, searching for lost time, my lost time — time, identity, energy, accomplishment, morphology, all lost to cancer. And I know that such a search is inevitably a waste of time.

In mid-December, I did manage to conjure a little Photoshop distraction, inspired by a YouTube video that my friend Rachel found. It was a video about a fundraising partnership between the National Breast Cancer Foundation and Instinct Archery, the latter of which was selling ‘Hope’ pink-ribbon recurve bows to raise money for NBCF. The video started off with a row of male hunters, hanging out in the woods in their requisite plaid shirts, shooting arrows at several deer, followed by a pitch for these pink bows. Killing Deer for the Cure?? I wanted to embed this astoundingly ironic video in this post. But sometime in the few weeks since Rach, myself and several other bloggers lampooned it on Facebook, including a version of the Photoshopped image above that I posted on my blog’s FB page, I discovered that the video is now marked “Private.” Now, even the above link for these bows no longer includes any mention of NBCF. Apparently, we may have unwittingly pulled off another successful campaign of guerilla snark!

Well, that was cheering, but I was still stumbling over my temps perdu, wondering what the heck to do or say about it all. And once again, my cyber-sisters came to the rescue, starting with singleshot1 and her gloves-off post, Chuckles, the cancer clown, about what we mask with our glib one-liners and snark-du-jour.

Then came Rach, and her post, 2012, With No Apologies to 2011. Another marvel of tart truth-telling, she summarizes the reality of living with metastatic breast cancer last year, and the impact it may have on this one. Her three words: “I’m still here.” Her strategem: bitchblogging.

And then, I noticed some good ol’ astringent and righteous ranting on the FB profiles of a few of my ol’ breast cancer forum buddies, these wise and wise-cracking wenches who got me though many a midnight while I was enduring treatment, as we plotted revenge against those numberless numbnuts-who-are-mean-to-cancer-patients, by forming a band of bald, burnt, lopsided, estrogen-deprived breast cancer harpies, armed with pitchforks and power tools to even up the score.

And at last, I began to feel a wave of relief well up inside. I’m not a freak! Goddess-bless-me, I’m not alone!

And then I thought, if I really followed my inclinations, I’d choose three expletives as my words for the year. I can come up with several more than three of those to describe how I feel about 2011. As far as 2012 goes, I’ve observed thus far that cancer is still attacking my friends, still attacking their friends and family members, still running roughshod over our daily lives, still the backdrop for even the good stuff we choose to do, so we can have us a nice, juicy dose of sort-of-normal now and then.

So, do forgive me, those of you with kinder, gentler hearts than mine, but at the moment, I’ve got nothing insightful to say about 2011, nothing inspiring to say about 2012. And I don’t give a rodent’s derriere either. And I’m sure as hell not big on that ‘Hope’ shit. It may kill a few deer, but it hasn’t cured anything. Plans are good, though. I like plans. The best thing I accomplished last year was to re-learn (yes, I know…) how to make plans. And even to fulfill some of them. But plans are dicey, too. Because you never know. Because, as has been stated at the top of this blog for three years now, life is what happens when we’re making other plans.

But you know what? A lot of us are still here. And for now, I’m quite blankety-blank-blank relieved about that.

Let the bitching begin!

First, do no harm?

This is not what I wanted to write about today. But yesterday, I woke up during an outpatient diagnostic procedure, began to feel stabbing abdominal pain, made the surgeon and clinical staff aware of this, and nothing was done about it. I was in a haze induced by the conscious-sedation cocktail I’d been given — Versed, Fentanyl, and, interestingly, Benadryl — so perhaps I was unable to articulate my symptoms as clearly as I might have. But still, I think saying, “That hurts!” and grimacing should have provided enough clues.

I was receiving a colonoscopy at the time. As far as I was able to determine, it appeared that the general exploratory part of the scope had been completed. I woke up while the gastroenterologist was removing one of several polyps that he found in my descending colon, the portion that runs down the left side of the abdomino-pelvic cavity. As a clinician, I found it interesting to see the scope screen in front of me, and to see how the polyps were caught by means of a surgical lasso (snare) and ‘burned’ off (cauterized) in essentially one step. But as a patient, I felt an abrupt stab of localized pain during every other excision. It is commonly asserted that polyp removal is not painful because the colon lining does not have pain receptors. But part of the procedure involves pumping carbon dioxide gas into the colon to allow for a clearer view, and this gas can cause abdominal bloating, cramping, and pain. Well, in my case, it certainly did. A lot. I felt like I’d been kicked by a horse. Several times. And it took several hours to go away.

Following on the heels of a week-long non-fiber diet, two days of drinking a few gallons of laxative prep, over thirty hours of consuming only clear liquids, plus interrupted sleep and no liquids the night before, let’s just say that I was pretty ragged by the time I left the hospital yesterday. I’d been looking forward to eating a normal meal after all this, but I had no appetite, couldn’t stand up straight because of abdominal pain, and ended up spending most of the day in bed, with a large heating pad over my belly. I survived, yes. And I feel better today, less haggard thank goodness, but still not quite normal.

My reason for writing this is that I do think, in the 21st century, it is unnecessary and utterly pointless for patients to endure so much pain during outpatient procedures. As far as endoscopy and colonoscopy goes, it is still common in most countries not to provide any sort of sedation or pain relief during the procedure. In the U.S., it’s the standard of care to do so, and yet, I’ve heard countless stories from American friends about inadequate sedation and pain management during GI procedures, as well as during many of the other outpatient diagnostic and excisional procedures we have to endure as cancer patients. And I ask myself why this is.

Pain is harm.

Here’s a typical story, one I’ve personally heard far too often. A woman feels a lump in her breast, goes to her primary care doctor, gets sent for mammogram, which is positive, and gets referred to a breast cancer doctor.

So, already beset with anxiety by now, she goes to the breast cancer doctor, who does a physical exam and an ultrasound that confirms the presence of the lump. The breast cancer doctor then says she needs to take a biopsy, hauls out a ‘fine-needle’ biopsy gizmo, a misnomer for what in truth looks like a large syringe that one might use to tranquilize a horse, and without further ado or topical anaesthetic, jabs it into her patient. Or, also not uncommon, she administers a local anaesthetic, and jabs the biopsy needle in without waiting for the anaesthetic to anaesthetize. And guess what? It hurts like hell. Big surprise, huh? Nothing like heaping trauma upon trauma.

And this is only the beginning, the intro to what is a frightening experience that may soon become a disillusioning one as well, as we experience endless procedural poking, prodding, jabbing, burning and poisoning, all too often administered with a baffling lack of compassion and plain old common sense.

And it’s baffling for one fundamental reason: causing needless pain and anxiety is just not good medicine.

I found an excellent article outlining clinical practice recommendations for procedural pain management, published in the July, 2011 issue of Pain Management Nursing, and posted on Medscape, that was put together by the American Society for Pain Management Nursing (ASPMN). In it, the authors assert that any and all of us ‘who undergo potentially painful procedures have a right to optimal pain management before, during, and after the procedure and should have a plan in place [...] before initiation of any procedure.’ [If the Medscape link doesn't work, you may find a PDF at this link. If you'd like a PDF of the references, please leave a request in a comment below.]

You would think it should be common knowledge in healthcare by now, but apparently it’s not universally understood that pain is, in fact, harmful. The ASPMN paper states:

Pain can cause both immediate and long-term harmful effects that do not discriminate based on age, gender, race, ethnicity, or socioeconomic status. There are limited data regarding [...] the effects of procedural pain; however, it stands to reason that the effects of acute pain would apply to procedural pain. These effects consist of a variety of physical, emotional, behavioral, cognitive and psychologic manifestations, including fear, anxiety, anger, [...] refusal to consent to further procedures, and distrust of the health care team, and may effect overall economic, social, and spiritual well-being.

Well, duh. Pain is stressful. It robs our bodies of the energy we need to heal, and when it is not adequately addressed, it robs us of trust and confidence in our healthcare providers. Several studies have demonstrated that post-surgical pain can tax our immune systems and throw our neurotransmitters out of whack, which can lead to increased infections, poor wound healing, and depression. For people with cancer in particular, as painful procedures pile up, it is crucial to effective treatment outcomes to prevent, mitigate and relieve as much procedural, treatment or surgical pain as possible.

So, why aren’t universal standards for procedural pain management practiced throughout the healthcare community? It certainly is not because these standards aren’t known or readily available to clinicians. Standards for the use of conscious sedation, topical anaesthetics, and local anaesthesia for outpatient medical procedures and surgeries are well-documented. Another excellent publication, Patient Safety and Quality: An Evidence-Based Handbook for Nurses, a book published by the U.S. Agency for Healthcare Research and Quality, devotes an entire chapter to pain management. In it, the authors assert that

Lack of adequate assessment and inappropriate treatment remain the major factors of undertreatment of pain. There is ample evidence that the appropriate use of analgesics — the right drug(s) at the right intervals — can provide good pain relief for the majority of patients. Thus, institutions should place their money and effort on improving these provider behaviors (assessment, prescription and administration of analgesics).

Okay, the nurses seem to get it. What about the doctors? With due apologies to my physician friends out there, who include a number of surgeons, I’ve had frequent cause to suspect over the years that a lot of people who grow up to become surgeons were the sort of children who pulled the wings off flies. Yet, survey studies have found that physician perceptions of procedural pain do in fact match up with patient perceptions of the same procedures. But the problem seems to be whether physicians perceive the pain that their patients are actually feeling when they’re feeling it. One study published in Academic Medicine found significant discrepancies between physician perceptions of their patients’ suffering and their patients’ own descriptions of suffering, concluding that physicians needed better training in their evaluation and communication skills. But another study, published in Psychooncology, found that even with special training, physicians were no better than their untrained counterparts in communicating with and helping their cancer patients through their ordeal.

Where does that leave us?

Once again, it seems that the onus is often quite literally “on-us,” the patients, to ask for what we need. CancerCare.org recommends, as many others have, that we learn to be prepared consumers of healthcare. Particularly with cancer treatment, it helps to bring someone with us to our appointments, prepare a list of questions, take notes and/or record the visit, and keep asking questions if we are not sure we understand something. Often, nurse navigators or nurse practitioners can spend more time with us and address our concerns more thoroughly. In a previous post, Delayed Gratification, I listed some resources for patient self-advocacy. They are repeated at the end of this post. The above-mentioned Agency for Healthcare Research and Quality also provides some videos that may help you improve communication with your doctors.

Before yesterday’s adventure, I had spent what I thought was ample time getting my questions answered by the nurse practitioner at the GI practice that was in charge of my colonoscopy. But it’s difficult to anticipate everything before every procedure. After the pathology results come back, I have a follow-up appointment with her. And once again, as I’ve had to do before, I’ll be providing some feedback about my experience yesterday, in the hope that it will improve a future experience for myself or someone else. However, I do hope that, as long as my polyps biopsies are negative, I won’t have to do this again for ten years! Live and learn…

In the meantime, please feel free to share your stories here. It always helps to know you’re not alone.

A few related blog posts and links:
The Price of Silence, by blogger and author Beth Gainer
Not Ideal, by blogger and author Sarah Horton
Patient Advocacy: When Disruption Creates Win Win Win, by Trisha Torrey, Disruptive Women in Health Care
Health Care Self-Advocacy: Be the Squeaky Wheel, by Care2 Make A Difference
The Patient Empowerment Network, by Esther Schorr
The Patient Power Blog, by Andrew Schorr
The Prepared Patient Forum, founded by Jessie Gruman, PhD